They Accepted

This last part of the school year has been a bit challenging for our little dude. We are getting some notes coming home in his daily binder; “rough day”, “agitated”, “did not want to work with classmates in group”, “impatient”, “not waiting his turn”, etc. It’s the end of the school year and Henry is having a hard time holding it together some days. This is not surprising to me for a kid with an autism diagnosis. We work daily in the area of his social/emotional challenges. Always. Still.

Last week I had gotten a note and a call from the principal’s office that Henry was bothering some girls on the playground and he reached out and grabbed one of them by the shirt. This week a note came home, “arguing today”. Henry doesn’t like to get into trouble. And he really doesn’t like to talk about it when he does get into it. You can almost see how physically painful it is for him to admit he is wrong or to apologize for something. We have been working VERY hard on how to handle this in an acceptable manner. He wants to play with the other kids sometimes but he just doesn’t know how. Nor does he get those social cues when the kids don’t want to play with him or play his way. Another not-so-surprising aspect of his autism diagnosis. This is his most challenging area for sure! I was wondering if this most recent note had something to do with the playground issue from last week. I worry a great deal about what these social challenges might mean for Henry as he grows up. For how long will these challenges be oh-so-challenging for him? Will he ever learn how to navigate these waters appropriately? Will the kids ever understand and accept him for who he is?

When I questioned Henry about who he was arguing with I got the typical first response I usually get from him, “I don’t want to talk about it!” He had just come home from school which is a rough time of day anyway. Fine. Let him decompress.

In continuing with our vigilance in using everything as a possible teachable moment, later that night before bed when all was quieting down, I asked him again who he was arguing with. “Mrs. Q.” (This is his SSD resource teacher that he adores so I was beginning to worry what this was all about.)

“Why were you arguing with Mrs. Q?”

“I don’t know, Mom. Sometimes it seems like I just can’t help it.”

Fair enough. Not that this is acceptable, mind you, but at least he was thinking about it and talking about it calmly with me.

“Well,” I said, “don’t you think you should apologize to Mrs. Q for your behavior?”

“Yeah.”

“Okay, good. So when do you see her next?”

“I see her every day, Mom.” he told me in his “duh!” tone.

“Okay, so the next time you are with her you should apologize and try to work harder at not arguing with her. Alright?”

“Yeah, okay.”

I didn’t say anymore about it after that until he got home from school the next day. “Hey, dude, did you talk with Mrs. Q?”

“Yes, and I said I was sorry and I will try to be better.” (I don’t know if he actually did apologize to her but for now I am giving him the benefit of the doubt.) I figured this was the end of it at this point and we let it go.

However, this morning while the little ones were eating breakfast and I was getting clothes ready for the day, Henry came to me and said, “Mom, you know how I told you I apologized to Mrs. Q?”

Uh oh…”Yes, I remember.”

“Weeeellllllllll, I also apologized to the girls I was bothering the other day.” And with a big grin on his face he said, “And they accepted!”

ummmm….wow! Now, I don’t know if there was any adult intervention or whether he did this on his own but still, big. huge. wow.

“Oh, dude! That is really great! I am so proud of you! Great job!” But, again, as we continually try to practice and remind and practice more, I couldn’t help adding, “So now that you said you were sorry for that, you will try hard and not bother them anymore, right?” While he is getting better at saying he is sorry, he still has a hard time stopping some of the behaviors.

“Right. But can I play with them?”

“Of course! But you need to asked them if you can play with them first. And if they say no, then you need to leave them alone, okay?”

“Yeah. But then can I still wave to them and say hi?”

Oh my sweet little dude! “Yes! That would be very nice of you!”

I realize that Henry’s classmates will never really understand how hard all of this social interaction is for him. But today, I feel we are one more step closer to acceptance!

It’s That Time of Year…

It’s that time of year. And no, I’m not talking about Autism Awareness Month. For us, it’s time for the annual IEP. Time to schlep out “the binder” and review last year’s goals. Time for that painful rock of anxiety, that I try to keep pushed WAAAAAY down, to slowly rise from my stomach and stick in my chest and throat. Time for me to agonize over what goals  for next year in 2nd grade will be in the BEST interest of my son.

I vowed to stay positive this month of April for my son and for autism awareness. But as I reviewed Henry’s most recent progress reports my positivity faulters. Yes, he has progressed in every single one of his goals.  In fact, he even met his language therapy goal! We adore our SSD teachers, Mrs. T and Mrs. Q!  So does Henry! Lots of wonderful comments on his progress report…his IEP progress report.

His gen. ed. progress report is a whole ‘nother ballgame.  He still continues to have many “Needs Improvement” marks in every area and “Still Developing” in Written/Oral Language. (ummmm…so how did he meet his IEP language goal?)  His gen. ed. teacher is amazing!  I don’t think we could have gotten a better match!  Miss SB always has positive things to say about Henry and she always remarks on the improvements he is making every day.

And still…the anxiety is there.  The worry is there.  If another parent came to me and shared these kinds of thoughts about their child, I know I would tell them to keep moving forward, focus on the positive, work together with your team, communicate with your team.  Because as a parent, we know our kids and can advocate for them better than anyone else.  It’s all going to be OKAY!

Do as I say, not as I do.

This year I go into Henry’s IEP more experienced in the process.  Last year it took less than an hour and I came way very satisfied and as happy and hopeful as I could.  This year will probably go the same way.  I don’t know why I get so anxious.  Quite frankly, it’s exhausting.  Nonetheless, I will get through it.  Somehow.  As I do every year during this time.  I just have to pretend to be that “other parent”.  That parent that I would encourage, “It will be OKAY!”

Forget the Hate. Celebrate! ~ My Autism Awareness Day Post 2013

Every time I think about the subject, or see a blog post, or article, or discussion about it I immediately become EXTREMELY anxious! Like an I-can’t-breathe kind of anxious. Folks within the autism community are STILL “picking sides”. I generally make a run for the hills to avoid any possible confrontation with it.  I feel as if I could easily hyperventilate just trying to write this post.

A year ago, I wrote this.  And here we are again. It’s April. Autism Awareness Month.  Sadly, what I wrote last year still feels very true to me today.  I’m disappointed. It makes me anxious and sad and tired.

I.just.don’t.get.it.

I will support Autism Speaks, the Autism Society , Asperger Syndrome and High Functioning Autism Association (ASHA), the National Autism Association, LifeSkills/TouchPoint Autism Services, and many other autism organizations.  I want to support and promote ANY and ALL of the wide SPECTRUM of organizations and individuals that are working positively toward helping ALL others in this great big, and very diverse, spectrum of AUTISM. We need awareness at all levels of autism so we can promote compassion and understanding for ALL on the autism spectrum, no matter where on this spectrum they may be! It hurts my heart to think that some in our “community” still can’t see that.

Perhaps I should be glad that I don’t get the hate. I’ve got no room in my life or in my heart for more negativity and bitterness. April is Autism Awareness Month and I know that most of my readers are highly aware of autism every damn day, as am I. In 2012 I followed up my post linked above with this post.  And this too still rings true.  Positively so.

Because of all of this I’ve decided that I want to use this month of awareness to CELEBRATE autism. I will celebrate my son, his differences, his challenges, and the amazing progress he continues to make! I will celebrate our educators, counselors, therapists and physicians who help support and encourage us along the way! I will celebrate our whole family for rising up and overcoming the challenges that autism often brings into our lives. In doing this perhaps others, both within the autism community and those outside of it, will learn by our POSITIVE example. And really, isn’t this what we want to accomplish all year long?!?!

Welcome to April! Celebrating Autism Month!

I Saw the Light

I woke up this morning at 4 o’clock and couldn’t get back to sleep. Hubby was up at 4:30 (not all that unusual for him though). We were enjoying a quiet morning (as much as one can “enjoy” anything at 4AM) drinking our tea and watching the news. Next thing we know the boy is up and crawling into our bed.

BDC: Hey, Henry, what are you doing up so early?

Henry: I saw the light.

Me: It’s not light outside.

We encourage him to not get out of bed until the light shines through his curtains.

Henry: I saw the light inside.

BDC: Your door was shut Henry and only the kitchen light is on. (A small one over our sink)

Henry: *in his “duh!” voice* Uh, the light under the door.

Oy vey!  Now Lucy is up too!  Of note: the teen who is SUPPOSED to be up now, is still sleeping with her alarm going off. Looks like this is how we’re rolling today… :-/

The Other?

My darling little chameleons were supposed to be getting dressed for school this morning.  There was much commotion and very little getting dressed. As I entered the room, without a word from me, Henry immediately jumped to his new standard response, “Lucy started it.”

“I don’t want to hear about who started it. You both need to quit messing around and get ready for school!”

“But Mom! Lucy did start it!”

“No I didn’t!” Lucy just couldn’t not defend herself. (I know, double negative. You know what I mean)

Then my mother’s own voice somehow came  from me, “I don’t care who started it!  The other needs to finish it!”

But my mother didn’t have a kid like Henry. “But Mom, we don’t know who ‘a other’ is!”

Yeah, sometimes it’s better to just walk away.

A Post That Makes Me Gag

My Facebook page, A Chameleon in the Spectrum, has been a little quiet lately. Between work and family, sickness, and trying very hard to get things accomplished around the house, I just haven’t had a lot of time to check in there. This morning I stopped by my page to try to get caught up, perhaps throw out a status post, share a meme, etc. As I scrolled around I noticed that most of my personal status posts, those other than sharing someone else’s post, have been about vomit. Or emesis for those medically inclined. Puke, barf, up-chuck, or throw-up for the rest of us.

It seems I’ve cleaned up at least as much puke this week as I have done in my whole life. It’s one of the few things that truly turns my stomach. Literally. No pun intended.  I really do have to fight to not throw up myself. Our two girls are pretty quiet and “neat” about it. As for the little dude, well ASD and vomit are a horrible combination.

There is much crying and screaming and throwing up all along his way to try to get to our room. The bathroom is right across the hall from his room which he must pass on the way to our room, by the way. As soon as we hear him usually we are able to head him off at the end of the hallway to find he has thrown up just about everywhere except the toilet.  I do my best to calm and support Henry, getting him to lean over “the bucket” or the toilet, rubbing his back while trying not to gag as well. Grant and I have spent hours this week, at all times of the night mind you, cleaning and sanitizing every square inch of the path from the kids’ bed room to hallway to bathroom. (yes, including the walls.) We’ve done LOADS of laundry and thrown out two area rugs to the garbage.  It’s no wonder that I’ve been preoccupied with vomit.

Now, my mother LOVES to tell the story about how when I was a kid, I was the worst for throwing up. There was much crying and screaming and stomping and throwing up everywhere. I remember. I hated throwing up because it completely. freaked. me. out. I couldn’t breathe. My whole body was seizing up and out of control. And what throwing up actually feels like…ewwww!   I  remember when I was throwing up my entire being could only focus on the FEELINGS of throwing up. The term “sensory overload” sounds familiar and seems appropriate here. And I’m not even on the spectrum.

In case, by chance, you’re curious about the mechanisms of throwing up feel free to click here. I don’t need to go  into how this process  affects our senses either as we’ve all experienced it. (You’re welcome.)

I wonder what it must feel like for Henry. All I can imagine is my experience with throwing up multiplied by 100. It’s awful to see your child get sick. When I think about the sensory aspect of it for my son on the autism spectrum…well, it’s just that much worse. So many hurdles for him to overcome. It seems odd to add “throwing up” to that list of challenges.  As he continues to grow and learn and cope, I know he will learn to deal with many things, including throwing up. I just wish it wasn’t such a GROSS challenge. And I certainly hope he’ll learn he doesn’t have to obsess  about  it after it’s over.

 *GAG*

What Is Normal?

We’ve had our share of germs going around this winter break and our little dude on the spectrum did not get left out. Monday morning Henry woke up as usual, had breakfast and his meds and then promptly threw up. For the next hour or so, through tears and whining and crying, he perseverated on vomit. He’s had a fever since then but actually has done quite well once we convinced him on day #2 that he didn’t need to keep “the bucket” right next to him because we were sure he wasn’t going to throw up again.

For the last 3 days, my little dude spent his days zoned out underneath his blanket in my bed. I wasn’t feeling well myself and it was a wonderful reason to join him there. We talked, we rested (I actually napped!),  we watched TV, I read, he played video games. Interestingly, during this time we did not give him his ADHD meds. That’s how I knew he really didn’t feel well. No meds and I’ve never seen him be so still and quiet for so long! He never complained of anything except a headache and just not feeling well. His fever was running between 100 and 103. He wasn’t eating as much but more than I would expect and he was great about drinking water. Despite both of us being sick, I’ve been thinking about how much I’ve enjoyed spending some “normal” quiet time with my son.

Henry, being the kind of kid that he is, once he got over the whole “throw-up” perseveration he moved on…  such that I’ve taken his temperature about a zillion times now.  “Take my temperature mom. Am I normal?”

Normal. hmmm.

Today is day #4 with fever (and throwing up his breakfast again) so I kept him home from school and got him into see our pediatrician. We spent quite a bit of time trying to reassure Henry that he was not going to get a shot. As Dr. K was checking out his ears (and finding an ear infection!), Henry asked him, “Am I normal?”

Our doctor chuckled as he answered, “Well Henry, I’m not sure I know what normal is.” (and this is just one small reason we love our pediatrician!)

Henry, very matter-of-factly said, “You know what normal is.”

Dr. K replied, “I’m just a doctor, Henry. What is normal?”

In his incredulous tone Henry said, “You know! Normal is when you’re not sick and you are just your regular self.”

Yeah, THAT’S the definition of “normal” I’m using from now on. And I’m relieved that Henry sees himself as normal. Because he IS. It’s okay to be different and still be “normal”.

As an aside, we were quite surprised about an ear infection as Henry never once complained of ear pain or hurting on that side of his head. I’m glad I took him in. Now Henry can work on just getting back to his normal which is my favorite kind!  Just being your regular self.

The Holiday Letter Not Sent

I was undecided about sending out holiday cards at all this year. 2012 has been a particularly difficult year for me personally and the thought of stuffing a hundred or so envelopes with a picture of our smiling faces seemed a bit like a lie. No way was I going to be able to write a cheery holiday letter to go with it. For me, this year has been filled with bouts of depression and anxiety. I’ve been daunted and overwhelmed by the task of parenting our teenager, our son on the spectrum, and our very feisty, strong-willed Kindergartener.

The spring was filled with conflict and teenage rage from Molly. And the difficulty of raising a child on the autism spectrum is a constant source of anxiety and exhaustion. Our days are filled with reminders of how to behave appropriately without outbursts or meltdowns, social stories, and trying to get Henry to try things outside his “Kansas” (his comfort zone). Summertime found me most days in my van running kids from two different summer camps and summer school all the while trying to complete an abundance of work that was coming my way at my at-home medical transcription job. We also learned that we would be losing our beloved respite care provider, Maya, to graduate school in the fall.

My job had many ups and downs this past year as well. There was always a question as to whether I would have a job or not. Would they outsource to a larger company in preparation to transition to electronic medical records or would they decide to keep us on due to the very high volume of work they were bringing in with no plan in place for the EMR transition? This fall the questions were answered when after 6 years with them, they gave notice that my position would be eliminated. Panic about our tight financial situation getting even tighter consumes me.

And then December 14th happened. The Sandy Hook tragedy. On that day too, a dance-friend of Molly’s lost her 2-year battle with cancer. Just 4 days before that amazing, incredible young woman’s 15th birthday. I couldn’t log on to Facebook or even watch the news. It all hit way to close to my heart and I just couldn’t bear it. This past week has found me trying to cope. Trying to process these recent horrific events. And as such events usually do, to re-evaluate our own lives and relationships.

Through it all, Grant, as always, is the rock of the family. The cornerstone of our tribe. “We are OKAY. It will all work out. Look how far we’ve come!”

I want to believe that. I have to believe that. Down deep I know he is right.

This past year has brought amazing growth and maturity for Henry. Meltdowns are few and far between. Outbursts are lessening as well. We have conversations….back and forth…that HE initiates! He volunteers information about his day more often. HE chose to try Boy Scouts this fall and likes to wear his Tiger Cub uniform. He graduated from the additional literacy help he was needing in just a few months and he is up to speed with his mainstream 1st grade class. His unique personality continues to change and emerge and it is breathtaking.

Despite Lucy’s recent testing of the boundaries of Kindergarten, she too is maturing. She’s so very bright. Her exuberance and quick wit take us often by surprise. As the “baby” of our brood she lives up to that third-child stereotype of being the clown, the entertainer, the comedian. May the Higher Powers help us all!

One of the things that has really brought me much joy this year has been watching Molly transition into high school with amazing maturity and ease (relatively speaking, of course). I’ve never seen her so excited about anything as she is about marching band! It brings tears to my eyes just to see  her enthusiasm and natural talent for this! Our high school has an amazing music program and Molly is taking to all of it. It’s brought me such happiness that Molly has accepted my involvement in the parent booster group and I am thrilled that she allows me to share in this amazing experience with her! I feel a connection again to our oldest!

For me personally, I am meeting new people  and establishing new relationships with fun and interesting folks as I continue to pursue  sustainable income. I’m enjoying the holiday retail season more than I thought I would as I’ve taken a seasonal job at a local Barnes & Noble. I’m surrounded by books and people who love books and reading as much as I do!  This past year I’ve met and befriended writers/bloggers and authors that inspire me and encourage me to continue to write. I continue to speak one or two times a month at TouchPoint Autism Services to the new parents going through their ABA parent training program. Grant lends a never-ending supply of support, encouragement and love to our entire family!

Earlier this week I went ahead and stuffed those envelopes with our holiday card. On it is a picture of us taken of us this past summer at TouchPoint night at the Magic House. All five of us. Together. Smiling. The picture is not a lie. We are all healthy and  TOGETHER. And that makes us HAPPY! And THAT is all that matters!

Wishing everyone a groovy Holiday Season and Peace in 2013!

Zombies vs. Princesses

[Ed. Note: I feel I need to preface this post to say that we do, in fact, love our school, our teachers, and our new principal. They have been nothing but understanding and supportive of all of our kids! But occasionally, it does seem we catch them momentarily off-guard.]

Friday I got a call from our school’s principal. Our  Kindergartener had been sent to the office for the third time last week. During the course of our conversation about my daughter’s infractions, our concerns that the behavior problems seem to be escalating, and how we might handle this situation, the principal, Dr. P, wanted to share with me exactly how Lucy was spending the time in her office.

Dr. P: Lucy has to sit in my office while she completes her work. She did a good job focusing on her task and following directions so when she was done I let her take a break and color some pictures. First, she drew some pictures of zombies.

ME: (with a little laugh) Yeah, that sounds about right.

Dr. P: Well, I asked her if she saw zombies on TV and she told me no.

I could hear Dr. P give a tiny sigh of relief. Thank the gods Lucy answered “no” because Dr. P had sounded a bit taken back by these pictures.

Dr. P:  (in a brighter, more reassuring voice) …and then she started drawing more normal things like a princess in a tower. You know, more typical things for 5 year-old girls.

ME: Well, actually Dr. P, zombies are kind of normal for us.

Perhaps I should have kept that little skeleton  in our family closet? (no pun intended.) Hey, at least I made no mention of the pirates, monsters, genetically mutated animals, and robots that routinely show up around the house!

Dr. P:  Oh…I see. Well, then..

I spent the next few minutes doing my best to sound like a “normal” parent who is relatively sane and very concerned about my daughter’s behavior. I was hoping to convince her  so we would not get a call from DFS (Division of Family Services) over the weekend.

But truth be told, I’d pick zombies over princesses any day. Well, unless is was a zombie princess. Or a really cool warrior princess that could defeat zombies…

Principal’s Office vs. Eye Contact

This evening Henry, Lucy and I were munching our supper of grilled cheese sandwiches and talking about our day. Actually, Henry and I were doing most of the talking while Lucy remained silent.

ME: Lucy, why don’t you share something good about your day?

LUCY: I don’t want too.

ME: Is it because you got in trouble today?

LUCY: I don’t know.

ME: Well, it’s not good that you didn’t behave well today but I’m sure you made some good choices today and had some good things happen, right?

LUCY: I don’t know!

With every answer Lucy would look down at the floor and away from the table.

HENRY: Is it because you got sent to the principal’s office?

LUCY: I don’t know! I just don’t feel like talking about my day!

ME:  Henry, please just eat your sandwich.

HENRY: But mom, it’s not good that Lucy got sent to the principal’s office.

ME: That’s enough, Henry.

LUCY: Henry! Stop! I just don’t know about my day!

Henry chews thoughtfully and then he gestures with his fingers toward her with one hand and continues to eat his grilled cheese that is in his other.

HENRY:  Lucy, look at me. Lucy! You know, you really need to look at me when we’re talking!

#youknowyou’reanautismparentwhen…eye contact takes precedent over a trip to the principal’s office.